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The 2.3.13 Issue

In what was an overwhelming response to Susannah Meadows’s article about treating her son’s juvenile idiopathic arthritis with conventional and alternative treatments, we heard from the medical community and from families of children who have the condition. Some were complimentary; others were critical of an article they felt made a case for alternative treatment at the expense of mainstream medicine. The article portrayed one family’s desperation to halt the progression of their son’s disease and the range of treatments they tried. In a case with few certainties, it was nonetheless clear that the source of this type of arthritis, and thus its cure, remains elusive for many.THE EDITORS

It is sad that Shepherd Strauss and his family had to go through so much physical and emotional pain because of the delay in his diagnosis and treatment. It is sad that his mother feels she cannot trust even the most reputable, well-trained physicians who recommended carefully tested and approved medications. And it is especially sad that other families may choose to delay appropriate treatment of arthritis, hoping for a miracle cure through diet. Before these treatments were available, children with juvenile arthritis often experienced chronic pain, progressive joint damage and sometimes blindness and death. Now most can live normal lives. If arthritis could be successfully treated with diet alone, we would do it. Most pediatric rheumatologists are open to a discussion about incorporating complementary treatment approaches, but it must be guided by the best available evidence to ensure a good outcome. While it is true that we do not know what causes arthritis, we do have proven treatments, and children are harmed when we delay in adequately treating them. ANNE M. STEVENS, M.D., PH.D., Pediatric Rheumatologist, Seattle and HELEN EMERY, M.B.B.S., Pediatric Rheumatologist, Seattle, Member, National Board, Arthritis Foundation

As the mother of a daughter with juvenile idiopathic arthritis, I completely related to the author’s description of her son’s condition at the beginning — walking with a limp, change of personality, loss of appetite, sapped energy. My daughter had not only active arthritis in all of her joints, but she also often had a fever of up to 105 degrees and had pericarditis — swelling around her heart. It has been frightening to give my child medicines off-label, before they are F.D.A.-approved for children. It’s not easy to give your child a daily injection, and have her run and hide in the closet, screaming in tears. It’s not easy, even when you truly believe that you are doing the best thing for her. But when your child’s life is on the line, and she is having suicidal thoughts at 9 years old because of her chronic pain, it’s amazing what you can force yourself to do. Our story ends similarly to the author’s: my daughter is also in remission (and by the way, she eats gluten). She has two titanium hips as a permanent reminder, but she is much like any other healthy, active teenager. Just as the author believes that the plan she followed is the reason for their outcome, I firmly believe that it was the care of our board-certified pediatric specialists, and the advancement of medicine, that led to ours. COLLEEN RYAN, Long Beach, Calif.

I was fortunate to discover alternative medicine 17 years ago. My son had ulcerative colitis at 5 and couldn’t tolerate chemotherapy. I found herbs through a support group and was able to put him into remission. Your article is helpful because it educates patients about some of the alternative possibilities. CHRISTINA HIFT, M.D., F.A.A.P., Consultant, Pediatric Rheumatology, Beth Israel Medical Center, New York

I wanted to compliment your article on its readability and the fact that it did not unduly criticize either traditional or alternative medicine. You did a good job in stating the impossibility of determining cause-effect issues in your child’s case. I hope readers take away your interpretive approach. As a neuropathologist, I am a strong skeptic of alternative therapies. But in some instances, including gluten sensitivities and other gut issues, there very likely is much to learn about some of these alternative-care options, within some semblance of a controlled study. PHILIP J. BOYER, M.D., PH.D., Department of Pathology, University of Colorado, Denver

The article addresses misconceptions about arthritis — that it is solely a disease of adults and that it is a mild inconvenience. But I am disappointed that Meadows chose to use anecdotal evidence. Her son’s improvement could have been attributed to one or more factors: coincidence, methotrexate or the alternative therapies. Your article may have the unintended effect of encouraging families to seek unproven therapies and possibly reject proven, effective therapies. NORMAN T. ILOWITE, M.D., Division Chief, Pediatric Rheumatology, Children’s Hospital at Montefiore, Bronx

A version of this letter appears in print on February 17, 2013, on Page MM6 of the Sunday Magazine with the headline: The Boy With a Thorn In His Joints. Today's Paper|Subscribe